Accepting the diagnosis

By Donna Jackel

At age 29, Julie C. seemed to be at an enviable place in life. She had good friends. She had come out as a lesbian and was comfortable with her sexuality. And she had a fulfilling job that took her to far-off places: She was coordinator of a Toronto-based Foundation.

That life began to slip away from her in 2007, when she was beset by money and relationship problems. Julie became suicidal, was hospitalized twice, and treated for depression. But her psychologist knew another side of the young woman—the high-energy, high achiever who could sometimes work at a furious pace with little sleep. In 2008, the psychologist told Julie that she believed she had bipolar disorder.

“I was terrified at first,” Julie recalls months later. “I had this dropping feeling in my gut. All the stereotypes I had about [bipolar] came flooding into my head. I have a friend who is bipolar and she has been almost homeless a couple of times, and in and out of hospital. I thought, ‘Oh my God—is this what my life is going to be?’”

Julie, now 31, has accepted her diagnosis. She is stable and feels much better than in the past. She takes her medication daily, maintains a regular sleep schedule, works out, and has improved her eating habits. She still works for the Foundation, but is planning to move back to her hometown and work long-distance.

For others, the road to acceptance can be long and circuitous. Peggy M., 38, of Wisconsin, has experienced highs and lows since her teens. Although Peggy was diagnosed with bipolar in 2002, acceptance did not come until six years later when she had her first negative work evaluation. Peggy received a poor rating in several areas; the comment that hurt most was “poor communication skills.” “I have a master’s degree in communications. [The review] was a direct contradiction to what I knew about myself,” Peggy says. “That’s when I finally had to admit it was the bipolar affecting my work.”

I had talked myself into thinking I had bp-light…

Many factors influence how well a consumer is able to adapt to bipolar. These include the severity of the illness, level of self-awareness, one’s attitude about mental illness, availability of a support system, and access to quality health care. Some consumers are able to accept their illness after one or two manic episodes. Others remain in denial for years, burning through relationships, jobs, and money until they hit rock bottom.

“Bipolar is one of the illnesses people have the hardest time accepting,” says Sagar V. Parikh, MD, deputy psychiatrist-in-chief at the University Health Network in Toronto and professor of psychiatry at the University of Toronto. “Maybe one- third accept [the diagnosis] right away. At least a third totally reject it, and a third believe it, but when they are better for a while, begin to doubt it again.”

“It’s common for acceptance to take years,” agrees Evette J. Ludman, PhD, a clinical psychologist and researcher at Group Health Cooperative in Seattle and coauthor of Overcoming Bipolar Disorder: A Comprehensive Workbook for Managing Your Symptoms and Achieving Your Life Goals (New Harbinger Publications, 2009).

Fully accepting the diagnosis is “almost like joining the priesthood,” Parikh says. “The commitment to treatment is a major one that involves going to the doctor regularly and paying a lot of effort to regulating one’s lifestyle. It’s not just a commitment to medication, but a way of life.”

In his research, Parikh found that consumers with bipolar II have greater difficulty acknowledging the diagnosis than do those with bipolar I, which is typically characterized by clear-cut episodes of mania and depression.

The symptoms of bipolar II are subtle, he explains, making it difficult to perceive the hypomania as a symptom of the illness, rather than part of one’s identity. “Your highs are mild, your brain is working faster, you have more confidence and energy, you need less sleep—it’s the ideal human condition,” says Parikh. Because the symptoms of bipolar II tend to be sporadic, “it is difficult to conceptualize it as an illness,” he adds.

In his 20 years as a Methodist minister, Ron M. encountered people with bipolar disorder—there was the female parishioner who had threatened him with a knife, and the wild young man who had stripped off all his clothes. Because Ron associated the illness with such extreme behavior, he missed his own symptoms when they began in early 2003. He attributed his racing thoughts, restlessness, auditory hallucinations, and crying jags to depression. His behavior resulted in Ron being placed on disability leave by his denomination; he began seeing a psychiatrist and a therapist and started taking an antidepressant. Eight months later, Ron was diagnosed with bipolar II and prescribed a mood-stabilizer. He continued to tell himself he was “only” suffering from depression, however.

I told myself. ‘There is no way I’m bipolar.’

“I was convinced that if I could tough it out, I’d be fine,” he says. “I told myself, ‘There is no way I’m bipolar.’”

During this period, his marriage of 20 years ended. Looking back, Ron says it was this denial that prevented him from getting adequate treatment. Despite his skepticism, Ron began reading about bipolar disorder and keeping a mood chart. By the summer of 2004, he had accepted his diagnosis. “The research indicated that my moods and cycling were pretty consistent with the disease,” he says.

Since this breakthrough, life has “gotten a lot easier,” Ron says. He is more open-minded about taking medication. And by continuing to chart his moods, he can predict the ups and downs. “I will have five to seven good days and then I will crash and have about seven to 10 dark days,” he says. “You can almost set your watch by my cycling.”

Meanwhile, a series of changes have enriched Ron’s life. He moved from St. Louis to Tucson to be near family and friends; medication adjustments have brought him greater wellness, and last January he fell in love and remarried. “When I grieve for how my life used to be, I remind myself that if it was like it used to be, I would never have met her,” he says of his wife.

Because of his rapid-cycling, Ron, now 52, does not believe he will be able to lead a congregation again. However, he finds great fulfillment helping others as president of the Tucson DBSA (Depression and Bipolar Support Alliance) chapter. “I force myself to go to meetings when I’m not feeling good,” he says, “And when I am feeling good, I need to go so I can share with someone to help them in their time of struggling.”

Indeed, the stigma and discrimination associated with mental illness is a huge barrier in coming to terms with bipolar, consumers and experts agree. It is because there are so many misconceptions and preconceptions about mental illness that Ludman, the Seattle psychologist and researcher, hesitates using phrases like “accepting the diagnosis.” “I’m not very fond of labels,” she explains. “Everyone has their own story of what ‘accepting’ [the illness] means. It may mean ‘I’m crazy,’ or ‘No one loves me.’”

Jo R., an executive assistant for an Atlanta-based optometry association, resisted her 1997 diagnosis for eight years. To her, bipolar disorder meant that she could no longer trust her own mind. “After 36 years of living, I couldn’t think my thoughts were incorrect,” says Jo, who grew up in poverty in the small hamlet of Jasper, Florida. “I was intelligent and had accomplished a lot, so I couldn’t be crazy.”

Being bipolar forces you… to be the best you can be…

Jo told herself that her sleeplessness and psychoses were side effects of her antidepressant. Denial cost her deeply: She lost two jobs, resulting in bankruptcy and the loss of her home. But it was not until she spent a week in a state mental hospital that the reality of her situation fully hit.

“There was a beautiful woman there who yelled and barked like a dog; there was another girl who urinated on herself,” she says. “The people there were crazy, and I was among them, so I was one of them. I told the doctor, ‘I’m ready to do whatever I need to do to manage this.’ That’s when I accepted the diagnosis.”

Jo, now 48, made good on her promise, learning all she could about bipolar and what she needed to do to stay well. Today, she works full time and has her own apartment. She keeps a mood chart and a journal, exercises, takes her medication, and avoids “toxic” people. Indeed, Jo is so vigilant about maintaining her down time and getting enough sleep that friends and family know not to call her after 9 p.m. She carefully tracks her spending, keeping to a strict budget and recording all her purchases. “The bipolar diagnosis has been a true blessing,” Jo now will tell you. “Being bipolar forces you to change to be the best you can be … to live a good life.”

The first step following a diagnosis of bipolar—even before medication—should be learning about your illness, says Parikh. “It is the single most effective remedy aiding acceptance. You’re not going to follow any treatment plan unless it makes sense to you.”

Mental health experts generally agree that accepting the diagnosis makes it easier to follow a treatment plan. Yet disagreement exists as to how to best approach patients who are in denial. Gary S. Sachs, MD, founder and director of the Bipolar Clinic and Research Program at Massachusetts General Hospital and an associate professor of psychiatry at Harvard Medical School, doesn’t “push acceptance as a requirement.” “Many patients will be willing to accept some form of intervention if I don’t require that they accept the label as well,” he says.

“Ambivalence about treatment is kind of the norm,” agrees Mark S. Bauer, MD, professor of psychiatry at Harvard Medical School, director of the Harvard South Shore Psychiatry Residency Training Program, and a coauthor of Overcoming Bipolar Disorder. “Studies show that only 20 percent [of consumers] come to treatment fully on board,” he says. Rather than try to convince skeptical patients, Bauer teaches them how to recognize their mood swings, understand how episodes have affected their quality of life, and how to control these patterns. He also helps consumers “develop a detailed plan for living a full life, based on their values and core goals.”

But others believe that accepting the diagnosis is integral to treating the illness effectively. “By accepting what the problem is and informing yourself about the disease and treatment, you are empowering yourself to control the disease,” says Francis M. Mondimore, MD, assistant professor at Johns Hopkins University School of Medicine’s Department of Psychiatry and Behavioral Sciences and author of Bipolar Disorder: A Guide for Patients and Families (The Johns Hopkins University Press, 2006).“My message to people is that we know a lot about how to treat this problem; how to manage the symptoms. You need to know all the options, so you can make an informed health-care decision. Once you’ve named something, you’ve got some control over it.”

Lise E. of Northfield, Vermont, grew up around mental illness. Her father committed suicide when she was 17 and her late sister had schizoaffective disorder. “I was always in fear of being like my sister,” Lise admits. A librarian at Norwich University in Northfield, and the mother of three teenaged boys, Lise, 48, had for years been treated sporadically for depression. Then a 2003 car accident—a drunk driver totaled the car she and her family were riding in—heightened her depression. Her family doctor switched her antidepressant and before long Lise became manic. She left her husband and sons and moved into an apartment. A hospitalization and a diagnosis of bipolar II followed.

“At first, I was just dealing with the ramifications of what I had done, and was kind of in shock—how could I lose sight of my kids and my family?” Then Lise had to learn to live with a new diagnosis. Instead of the more socially acceptable label of depression, she had a severe, chronic mood disorder. “It was scary and it made me sad,” she recalls.

In fact, consumers often “get very caught up in whether symptoms indicate depression or bipolar,” says Mondimore. “What we’re learning about mood disorders is there is a lot of overlap. As time goes on, we probably won’t even have separate categories for depression and bipolar. Instead, there will be a classification for mood disorders.”

Lise found that her family history actually strengthened her resolve to reclaim her life. “I lost my father to suicide and I will not do that to my kids, no matter how hard it is,” she says. “I go get help as soon as I feel those [suicidal] thoughts coming.”

Medication adherence is the biggest roadblock to fully accepting bipolar disorder, according to Mondimore. “That is the hardest thing—admitting that you are not always able to control your emotional life,” he says. But these feelings subside with the support of loved ones and by undergoing psychotherapy, he adds.

Side effects are a more tangible reason people refuse, or go off, psycho-tropic medication. For example, Jo had to learn to live with a 100-pound weight gain and hand tremors.

For her part, Julie initially refused to take lithium because it was so heavily associated with bipolar disorder. “I had talked myself into thinking I had bp-light—that I had a very mild version of what other people had,” she says wryly. “Friends also told me not to take it—that I could manage without it.” But then Julie began cycling more noticeably. “One week I would be excited and the next I would think the world was ending,” she says. “My therapist said lithium would help that.”

It can also be deeply frustrating to accept that medications can only manage, not cure bipolar, Ludman points out. The notion of having to take pills every day for the rest of her life intimidated Wendy L., 55, of Owensboro, Kentucky, who has “trouble doing anything routinely.” But there was a more basic reason Wendy at first resisted medication: “I liked my manic highs—I felt very productive. I didn’t want them taken away,” she says. After discussions with her husband, however, Wendy decided that for his sake she needed to stabilize her moods. “We’d been married for 30 years and I put my husband through hell those 30 years,” she says.

Diagnosed at age 50, Wendy has gradually learned to live with “flat” moods. “I was used to flying high and feeling all these ranges of emotions and that wasn’t there anymore.” Missing the soaring highs and bursts of energy leads many to stop their medication and land back in the hospital. “It’s very common for patients to stop taking mood-stabilizing medication when they begin to feel better,” Ludman says.

Sachs of Massachusetts General believes that having someone in your life to help you stay on track is so crucial for patients with bipolar that he helps those who don’t have an existing support system to develop one. “Mood disorders include periods when your perceptions are distorted, so the most important thing to include in your treatment plan is a care partner,” he says.

Those fortunate enough to have a loved one willing to join them on the road to recovery travel a less lonely path. “My husband educated himself. We sat down, talked about the symptoms, signs, and different triggers that had happened over years,” says Wendy. “He was willing to work through the changes. He was so accepting of it that it helped me accept it.”

You don’t have to be in a romantic relationship to find support—an understanding boss who lets you come to work a bit later because a new medication is making you sleepy; family and friends who visit you in the hospital; or a relative with bipolar who shares what worked for him—all can contribute to your wellness.

Julie, who was living in a small town when she came out as a lesbian, believes society is more accepting of homosexuality than mental illness. “In my office, I don’t care if people know I’m gay,” she says. “The few co-workers who do know about my bipolar will be like, ‘So are your meds working now?’ as if I’ll get on some meds, and then I’ll be normal. That’s not going to be it—I’ll have to manage my illness—even when I’m well.”

When Julie told her boss she had bipolar, the woman, who is also a good friend, responded: “You are still the same person. Nothing has changed, except that you know something about yourself that can make you feel better.”